The last days of life in hospital and at home

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Amber Quinn
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1 The last days of life in hospital and at home Beaumont Multi-disciplinary Palliative Care Study Day 28/9/2017 Dr Sarah McLean Consultant in Palliative Medicine St Francis Hospice Beaumont Hospital

2 Overview What are the priorities? Common symptoms at the end of life How to recognise the dying patient Rapid discharge pathway Community palliative care services Questions

6 What is important at the end of life? Strong consensus amongst seriously ill patients, bereaved family members, physicians, and other HCPs Pain and symptom management Preparation for death Achieving a sense of completion Being involved in decisions about treatment preferences / sense of control Being treated as a whole person Steinhauser et al JAMA 2000

7 Place of care rated least important of 9 attributes by patients

8 Physical care and place of care are important, but only components of overall care No one definition of a good death Quality of care at the end of life means different things to different people Collaborative MDT approach Important for good quality end of life care

9 Dying is a psychological and social phenomenon with a physical dimension, not the other way round

Achieving a sense of completion MSW memory work; life stories Being involved in decisions about treatment preferences /

10 How can we achieve this for our patients? Translates into better bereavement outcomes for caregivers too. Pain and symptom management excellent symptom control Preparation for death prognosticating as best can; communication Achieving a sense of completion MSW memory work; life stories Being involved in decisions about treatment preferences / sense of control advance care planning; having conversations to determine patient s goals and wishes Being treated as a whole person person centred care

11 Physical examination Keep to a minimum to avoid unnecessary distress Sites of potential pain Mouth Investigations Only with a clear purpose Tablet burden - review of medications Discontinue non essential oral medications Including prophylactic LMWH, insulin Switch po meds to alternative route if patient is unable to swallow Avoid im route as painful; if buccal medications are used ensure the mouth is moist enough; consider the PR route

12 Advance care planning To ensure patient s wishes and goals are achieved

13 When to refer to palliative care Assess need rather than prognosis Difficult to control symptoms Psychological or social issues Dependent children or elderly vulnerable relatives Difficult ethical question e.g. feeding or hydration

15 Common symptoms at the end of life Dying patients tolerate symptoms very poorly due to weakness Important factors: Excellent nursing care Prevention of new symptoms e.g. pressure mattress to prevent bed sores Anticipating future symptoms or needs and putting plans in place

16 Common symptoms in the last 48 hours Noisy moist breathing - secretions Pain Breathlessness Nausea / vomiting Terminal delirium

17 Noisy, moist breathing - secretions Oro-pharyngeal secretions not being coughed or cleared normally + accumulate in the upper airway Exclude acute pulmonary oedema +/- Lasix s/c Hyoscine butylbromide Buscopan 20mgs stat PRN s/c or up to 120mgs / 24 hours s/c infusion Glycopyrronium Robinul mcg PRN s/c or up to 3200mcg / 24hrs s/c infusion Hyoscine hydrobromide crosses blood brain barrier and can exacerbate agitation

18 Pain As per the WHO ladder Via s/c infusion if unable to manage the oral route Ensure breakthrough analgesia prescribed PRN s/c

19 Nausea / vomiting Dysmotility Maxalon Chemical causes Cyclizine / Haloperidol If also agitated Levomepromazine (Nozinan) Breathlessness Opioids Benzodiazepines Measures such as fan, cool air Oxygen if cooling sensation helpful

20 Agitation Think list reversible conditions to exclude: Pain Urinary retention Constipation Nausea Cerebral irritability / oedema Anxiety Side effects of medication

21 Delirium - off the ploughed track Common Underrecognised Undertreated Prevalence of 13 42% of patients in palliative care inpatient units Rising to 88% in days and hours before death Hosie A et al Pall Med 2013

22 Medication review Opioid rotation Shown to improve hallucinations and confusion in 29 / 42 patients rotated Parenteral hydration Delirium is the only aspect of terminal symptom control which may benefit from hydration Antibiotics If infective cause is suspected Mercadante et al Cancer Treat Rev 2006 Dev R et al Curr Opin Support Palliat Care 2012

23 Management - combination of a sedating anti-psychotic with a benzodiazpine First line Haloperidol 1-5mgs / 24 hours Midazolam 10 60mgs / 24 hours Second line Levomepromazine 12.5mgs / 24 hours+ Third line Phenobarbitol mgs s/c loading dose; followed by maintenance mgs / 24 hrs s/c

24 Breitbart et al Psychosomatics 2002 Cohen et al J Palliat Care 2009 Helping families understand delirium Distressing Higher levels of distress in spouses and carers who witness the delirium than in the affected patients Evidence demonstrates that distress is lowest in caregivers who were educated about the risk of delirium before it occurred

25 How to recognise the dying patient

26 Nurses, care attendants and family members are better at predicting death than medical staff Physicians more accurate as death draws near Clinician experience may improve accuracy

27 Palliative Prognostic Scale Modified functional score

29 End of life Day to day deterioration of strength, appetite, and awareness Signs and symptoms of death approaching: Profound weakness / bed bound Gaunt appearance Reduced po intake / difficulty swallowing medication Drowsiness / reduced cognition / difficulty concentrating

30 If end of life care at home is being planned

31 Rapid discharge pathway

44 Supports for end of life care at home

Community palliative care (CPC) Deluxe dying for the privileged few Increasing recognition of benefit of palliative care input aging population, diagnoses other than

45 Community palliative care (CPC) Deluxe dying for the privileged few Increasing recognition of benefit of palliative care input aging population, diagnoses other than cancer, underserved populations 90% of care in the last year of life happens in the home Increasing importance of supporting generalist palliative care provision Douglas, 1991

46 St Francis Hospice Inpatient units 17 beds Raheny 24 beds Blanchardstown

Community palliative care 260 300 patients between east and west teams > 1100 deaths / year Medical social work/ chaplaincy Bereavement services Carer support group Drop in carer support Hospice Day

47 Community palliative care patients between east and west teams > 1100 deaths / year Medical social work/ chaplaincy Bereavement services Carer support group Drop in carer support Hospice Day Care Complementary therapy Lymphoedema / MLD Outpatients CT, physiotherapy, nursing Breathlessness / Heart Failure programmes EXHALE Volunteer services Life stories Volunteer bereavement support service

48 Public health nurse Home care package Community Intervention Teams GP Community OT, PT, MSW Irish Cancer Society night nursing service

49 Education and Research Short courses and e- learning Library Kaleidoscope conference TCD / SFH MSc in Palliative Care Community and schools outreach

50 Questions?

Care in the Last Days of Life

Care in the Last Days of Life Introduction This guideline is an aid to clinical decision making and good practice in person-centred care for patients who are deteriorating and at risk of dying. The patient